Dementia at Christmas... how we help loved ones cope
Around 20,000 people in Northern Ireland are living with some form of dementia. Karen Ireland talks with the relatives of two people who are directly affected.
Some 20,000 people in Northern Ireland are living with some form of dementia. This time of year can be overwhelming and confusing for them. In a bid to ease into Christmas, the Alzheimer’s Society has teamed up with Titanic Belfast to offer a ‘Magical Christmas Experience’ for sufferers and their families. Bernadine McCrory, NI director at the Alzheimer’s Society, said: “We are so grateful to Titanic Belfast for inviting our families to be involved in the Magical Christmas Experience.
“Some of the best Christmas gifts can’t be wrapped, and hosting a dementia-friendly event so that families can enjoy Christmas together is a present that will not just build new memories for future generations, but will also allow families to remember and reminisce about Christmases gone by.”
Emily Wilson (61) is married to Jim (70). They have two grown-up girls, Jennifer and Heather, and three grandsons and live in Belfast. Before taking voluntary redundancy Emily worked as a policy and performance officer for Belfast City Council. Jim worked as a car parts sales manager before moving into fleet management. Emily says:
These are supposed to be our 'golden years' when Jim and I are retired and enjoying our time together and our time with the family and the grandchildren.
Unfortunately, I feel we have been cheated out of these as Jim has been very unwell.
At first, he was diagnosed with Alzheimer's but then as his symptoms progressed we were told he had Lewy Body, a very severe form of dementia.
He can be very lucid one minute and know who everyone is and what is going on around him, then the next minute he will be very confused.
He also has times when he hallucinates.
For the most part Jim knows everyone and he does have some very good days. However, the disease causes him to have very disturbed sleep, although he doesn't realise it, but he talks and cries out in his sleep.
It is very difficult to watch.
I miss my husband. He is still a very good and loving husband, but this illness has robbed my children of their father and the boys of their grandfather.
If he was well, he would be in the middle of everything.
I try not to let it hold us back and last summer I decided to take Jim to Australia, something he had always wanted to do, and I wanted us to have that experience before he gets too ill to enjoy it.
Many people thought I was mad, but others said 'Good on you, go for it'.
We flew business class as I knew it would be easier if Jim got some proper rest and, apart from a small blip when he was tired on the way back to Dublin, he did well.
He even told someone over there that he wished we could stay longer.
That's how I know he had a good time.
For me life is about making the most of what you have - yes Jim is unwell and has this awful illness, but he is still a great husband, father and grandfather and I know he loves us dearly.
Life is about making the most of every single day.
Initially when Jim started acting differently he had just changed jobs and we all thought it was the stress of learning new systems and a new team. We thought he was anxious, depressed and stressed because of the new job, but it soon became apparent that it was much more than that.
For years Jim cared for elderly relatives, including his aunts. He was also brilliant with my mum and went to every appointment with her. Now, when he should be enjoying his time, this has happened.
We will still have a traditional family Christmas and I am really looking forward to it as it is a special time with the grandchildren.
It's funny, though, as we used to call Jim 'the Grinch'. He wouldn't want to spend money at Christmas and gave off to me for buying so many presents.
Yet this illness has mellowed him and now he keeps asking me 'When is Christmas? When are we putting up the tree?'
And he'll say 'I'll have to start buying presents'. He has completely changed in that respect. We will have a lovely family day and Jim will join in all the fun.
I am really looking forward to going to the Titanic Centre with all the family.
Every year Jim and I take the grandchildren to see Santa - that is our treat and this year will be very special.
The Alzheimer's Society have been wonderful and are a constant source of support.
We know that if we go there and it all gets too much for Jim or if he gets tired there will be a support worker on hand to take him to a quiet room and look after him, so it won't take away from things for the children.
I'll be there with my elf hat and jumper - enjoying every second.
"That is what life is about now."
Kerry Buchanan (53), a writer, is married to Fraser (52) a Professor of Engineering. They live in Ballynahinch and have three grown-up children, Katrina, Laura and Patrick. She says:
My father Harold Matthews (89) lives with us in a mobile home attached to our farm. We built it there a few years ago when my mum was still alive. She passed away after surgery complications just before Christmas last year.
About five years ago we noticed that dad had started to have lapses in his awareness, where he would be driving somewhere and forget what he was doing. He would also have memory lapses about where he was or what he was meant to be doing at times.
We took him to the doctor and it turned out he had had a few mini strokes. He was also diagnosed with vascular dementia.
Alarm bells had been sounding for mum and the rest of us for some time, so we weren’t really that surprised when the diagnosis came.
However, I have to say that dad’s illness has had positives as well as negatives. He would have been a very short-tempered and frustrated at times in the past, but now he is very mellow and laid back. He hasn’t raised his voice once in years.
And for the most part he is able to manage on his own in the mobile home. I make him up his breakfast and leave all his tablets out for the morning the night before.
Dad is good with routine. The problems would arise if I try to introduce something new. I will leave him a salad or sandwich for lunch and he has dinner in the house with us and then watches TV with my husband and I for the evening.
I suppose that is the one thing that has been difficult. My husband works long hours and the evenings would have been our time to catch up and spend time together. We no longer have that time as grandad is always with us. But we don’t mind. He is good company and it gives us peace of mind knowing he is okay.
Dad still recognises most people but has difficultly with his short-term memory and we have to write everything down for him. He has a diary so I will put everything in that; that means he always knows what he is doing the following day, though he will always ask me at night ‘What day is tomorrow? What do I have on?’.
In many ways dad doesn’t look like he is in his 80s but he is frail and his mobility isn’t good. He has to use a walking stick and I will always have him on my arm when we are out.
We used to go out for lunch all the time — just him and I — but we don’t do that very often now. His short-term memory makes him very frustrated. The staff would only just have taken our order and dad would be looking for the food. It all becomes a bit embarrassing.
Dad does love to be in the middle of things and the way his mobile home is situated he can watch the horses from his window. If we are getting ready
for a show or something with the horses he can watch all that and feel involved.
He used to be a financial whizz and was great with investments, but now he can’t even manage his own bank card. He kept forgetting the Pin number, so I must keep it and we go to the bank together. He finds that frustrating.
On the whole, however, he does well and lives a full and active life going to different clubs and activities.
He may not remember the people, but they know him and would miss him if he wasn’t there.
Help people with dementia enjoy Christmas
- Put decorations up early and slowly. Take a few days or a week so it doesn’t come as a big change to a person’s usual setting
- Spread family visits out, as large numbers of guests and lots of noise can be overwhelming
- Create a quiet room, where they can go if things do get busy
- Keep a routine — keep meal times at the same time so your loved one can relax
- Play some familiar old Christmas music and look over old photographs
- Attend one of the Alzheimer’s Society Carols by Candlelight taking place from the December 3-21 across Northern Ireland